Wednesday, 03 December 2014 20:45

When talking about the dialysis diet was called 'vulgar'

Written by  Kamal Shah
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I was talking to a group of dialysis patients a few months back. I first did a general talk about how to have a good quality of life despite being on dialysis. I then had a Q&A. Typically, questions in this kind of a session invariably turn towards the diet. Diet, for most dialysis patients, is the worst problem if you don't count fluid restrictions.

I was answering some of the general questions on diet when a gentleman, probably about 60 years old started shouting. His contention was that any talk about things like diet was totally unnecessary and he even called it vulgar. I was quite taken aback. He said his wife was on dialysis and their entire life's savings have been spent on her treatment. The anger in his voice was palpable. For him, any talk that purportedly gives support to dialysis patients should only be about how patients should work together to get the government to subsidise dialysis or even make it free.

I explained to him that while I understood the financial problem of dialysis patients and their families, for the patients, diet is a big problem. Addressing the financial issues was going to take time in a country like India because a huge, concerted effort from patients, families, providers, doctors etc. would be needed and the process would be very slow. In the meantime, what was wrong in patients getting some queries answered on their diet and other simple things that could make their life better?He softened up after this.

I could totally understand his problem though. While in developed countries, patients don't need to think about how much their treatment costs, in India, treatment options are primarily dictated by ability to pay. When patients are often wondering how long they would be able to continue dialysis, talk about diet, exercise, quality of life etc. may appear vulgar!

When I talk about more frequent dialysis, I realise that a large number of patients would do it if they could afford it. When the constraints are not in your control, what really can you do?

Honestly, I was quite shaken up by the gentleman's outburst. Their life probably turned upside down after the diagnosis. All their plans probably went haywire. He needed some place to vent. He obviously couldn't vent in front of his wife. I am at least hoping that he didn't do that! A guilt trip is the last thing a dialysis patient needs!

This is why I am fully supportive of any attempt at Government sponsored healthcare. We need to eventually get into a mode where an individual gets the treatment he or she needs without having to worry about where the money for this is going to come from.

... http://www.kamaldshah.com/2014/12/when-talking-about-dialysis-diet-was.html

Kamal Shah

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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